United Brachial Plexus Network, Inc.

I was just told that I have osteoporosis in my right hip--not the left. My OBPI is on the right side. My wrist bone and a shoulder bone are underdeveloped on the Erbs side. Do you think this has anything to do with the Erbs?
Thanks
Pat

Pat,
Of Course we can't prove it, but YES artheritis/Osteo., varities of it is all part of ourErb's Palsy/OBPI's Medical Issues/secondary injuries and is common among us Adults with OBPI. I've got it in my LBPI hip too. Ohhh, when is someone going to document & Catalog our Adult OBPI's medical issues?? I think there are enough of us now who are willing Candidates!
HUGS,
Carolyn J
LOBPI/69

I am wondering how we could get a trial started for OBPI. I keep getting told that my conditions has nothing to do with the Erbs and I sure would like some proof that it does.
Overuse,arthritis,migraines,osteoporosis, spine conditions. the list is endless.
I guess applyin dor grant money and presenting to some hospitals may be a start

Pat
I don't think we will ever get a study on adult/obpi.

My PT showed me a skeleton one day and they used it like a puppet. He showed me why I have spinal stenosis in my lumbar region. L1 to L5 and S1. I reach across my body to do everything and twist my spine ... now multiply that by 67 years and you get extraordinary wear and tear.
It's just common sense.

He also showed me the cervical spine and how I reach for things and function on a daily basis. Now wonder I have stenosis there too!

I have a very high bone density in fact I once got a letter telling me I was high risk for cancer because of it. My GYN said that was a real stretch.
I have the bone density of a young adult. I have a smaller writs, shoulder, leg etc... The entire right side of my body is small. We were amazed when my daughter wore my wedding gown for a fashion show. She said she felt like something was twisting her on the right side forward and the one side was tight. We measured it and sure enough the gown is much smaller on the right side. I had it made by a dressmaker. I wanted a dress that fit that day!

How do they treat Osteoporosis on one side?

Kath

Guess I'll find out. I was told that my spine surgery affected the bone density readings. I am wondering if the fact that my right side is full of underdeveloped bones etc. would affect the reading as well.
It is so difficult to understand the full implications of adult BPI. It's hard to believe we can't get funding for some studies. Especially when millions are spent on the anatomy and brains of earthworms.
Don't you agree??

I am still amazed that a study was not begun at least 40 years ago. But until we began to make noise no one really thought we were here.

It is really a shame that we have to pay for someone else's mistake and then they don't even study ways to make sure we have long range care for this injury.

The lack of medical knowledge on bpi secondary injuries and compensatory injuries blows my mind. Or perhaps it's because they seem to ignore our existence.
They can't with the kids now but they don't get nor seem to care about our problems coping with obpi as adults.

It bothers me more that they know people with other illnesses and injuries have secondary injuries and don't apply this knowledge to us?

Kath robpi/adult

It isn't visible, people don't understand it unless they have it. I wish we could make a national challenge day . People could not supinate, raise the arm above their head, put it behind their back. On the other hand they couldn't bend their fingers. Let the challenge go for 4 active hours and see how frustrated they become.

Pat,
I was diagnosed with osteoporosis last year. I am 46. I was thinking the same thing that you are.....Judy

I wonder why doctors have not noticed this before?
I had to insist that they scan both sides and was told that it was impossible to have it on one side.

No one in my family has had osteoporosis so I guess I just got lucky even on the bpi side.

Kath robpi/adult

My mom has it--but she had perfect bones until the Dr. took her off hormones 4 years ago. Within 6 months she had severe osteoporosis.
I have heard that the Boniva and others like it have terrible side effects.
At any rate, I am going to go back on disability if they give it to me a second time. Too many health problems too fast--although most are related to the overuse syndrome. --Of course I probably coud get a job modeling the perfect hand......
My finger joints are fusing together. Between that, and the erbs arm losing all of it's strength in the forearm.,I'm going to make a supreme effort to enjoy every day , quit working 14 hours a day, preserve my arms and see if there is a world out there.
I suddenly realized I don't enjoy my life very much. Since I'm only 54, there's still time to change my priorities .
Does that sound selfish?